The zebra stripe ribbon for Stiff Person Syndrome refers to training in medical school where they teach future doctors that “when you hear hoofbeats , think of horses, not zebras! “

In other words, if a patient is having severe spasms, think of dystonia, nutritional deficits, multiple sclerosis. Do not even think about it being stiff person syndrome. This delays the diagnostic process unfortunately.

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I have an even more rare form of SPS. My variant is called Jerking Stiff Man Syndrome. And there are others!! I have found people all over the world with Stiff Person Syndrome; I just have yet to talk to someone else with my variant. And yes, we want to talk and reach out to others when we are able! I have a Facebook page called Stiff Person Syndrome Support Group USA, if you are interested!

The zebra stripe ribbon for Stiff Person Syndrome refers to training in medical school where they teach future doctors that “when you hear hoofbeats , think of horses, not zebras! “

In other words, if a patient is having severe spasms, think of dystonia, nutritional deficits, multiple sclerosis. Do not even think about it being stiff person syndrome. This delays the diagnostic process unfortunately.

I have found that is true, and with our average of 7 years to be diagnosed, it is really frustrating! (My diagnosis took more than 20 years!!)

Yes, good job on making the FB site. I go to as many SPS sites as possible including FB. Each seems to offer something unique. I read onthe two FB sites :) people do a nice job of supporting one another.

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There are some rare forms of Stiff Person Syndrome that are due to Paraneoplastic Syndrome. The person has a cancer and might not know it yet. The immune system Ramps up to fight the cancer and goes haywire attacking other organ. In SPS case it’s the central nervous system: brain and spinal cord.

Due to insufficient GABA, emotions such as excitement, anger, happiness etc cause muscle stiffening. The pain from that can cause a person with Stiff Person Syndrome to isolate self from social situations, causing loneliness and depression,

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Always consult your doctor before trying anything that you find online.